Am I doing something wrong?

dolittle

Anybody got a hand I can hold? Don’t want to go into lots of detail so that it will worry others, but I feel like screaming.

Have had this damned awful disease for 10 years now and the personal support I have received has been bordering on cruel at times – gruffly uttered words like ‘it’s your disease – it’s up to YOU to control it’, ‘the NHS is here for taxpayers’. I could go on and on with examples like these.

Yesterday I re-attended a clinic and when I asked questions regarding the tests which had been carried out, was told .. ‘Google this link on the internet and if there is anything you don’t understand, write it down and I’ll discuss it when I see you in 3 months time’. I asked how serious the condition was and if it could be fatal – the reply was ‘Is it fatal to drive a car?’ …. End of conversation. I couldn’t make the future appointment because ‘the clinics are all full – you’ll have to wait’.

I have just commenced treatment with Humira and, even though I’m apprehensive (afraid) about side effects, had adopted a very positive attitude … I want this to work. I am not what the medical profession would call ‘an inadequate personality’ and I don’t whinge, but I’m sitting here in tears and feeling absolutely destroyed.

Please, somebody, tell me there are others who are treated in this manner …. and it’s not just me - I have never given anybody any cause to be 'off' with me.. I spent nearly a decade working in the NHS, at one stage on duty 24 hours a day 7 days a week, but I never, ever made a patient feel the way I do now.

Sorry, but I have to share this with someone ……

Dolittle

nuttynana

Hi dolittle

You really are having a rough deal - my rhuemy clinic are always so considerate and understanding.

Maybe you need to make a complaint - the thing is if they are treating you like this how many others are experiencing the same?? If no one says anything it will continue, someone has to make a stand.

They should be there to support you and answer your questions.

Hope the Humira works well for you - I found I did not get such an quick response from it as I had with Enbrel, be patient and as you say you are - remain positive. The forum is good for off loading and letting of steam - don't apologise..

Good luck.

Hazel x

salamander

hi Dolittle, I would go to my gp and get a referral to another consultant/hospital. Simple as that. You deserve to be treated with respect and have your illness and any treatment explained properly to you. As far as the NHS goes, it is there for YOU whether you pay tax or not. 'Care free at the point of delivery' is the premise, nothing whatsoever to do with what tax you have or haven't paid. It's not up to you to control your illness, that's their job. I'm surprised you didn't tell them where to get off. I would have done
Sally

valval

hi i agree you should ask to be refured to some one else that not good enough i only been to mine twice and sopke to nurse once when she was telling me they think i might have oa and they will not be able to help me but to still come for app. i have to check how things going and she gave me good advice so no have not been treated that way and would not have gone back if i had report them

tkachev

They certainly shouldnt talk to you like that and make you feel so unhappy.Please dont blame yourself you arent doing anything wrong.
Unfortunately some staff are very dismissive.I didnt have very nice nurses at the 2nd hospital I stayed in after my hip op.They treated us like naughty children.I told them we werent to be talked to like that.I was very angry with one nurse who was unhelpful whilst I was being very sick.
Best wishes
Elizabeth

frogmorton

Hi Dolitle

Not nice at all!!

Do you go to the apts alone or with someone?? This might make them treat you better if there is a witness...???

If you do then you COULD complain...

Or you could ask to change to a diff hosp[ital... the one I go to is not my lcal one ? If you can get there.

You take care

I do NOT think you deserve this treatment eithr.

You take care

Love

Toni xx

skezier

Hi Dolittle,

I am afraid I get similar, not from the Rumo's but from one of the others. Mine even said 'how the hell should I know' over a question that to me was major. So a ((( ))) and well its not nice that this should happen to you.

Like the others said can you change hospitals? Is your gp on your side or not? I think if you have any chance of transferring then you should transferee asap!

With the questions, be careful goggling them a better idea might be to phone the help lines here cus they are very nice and know a huge amount as well as being able t help you know what you can do in this situation. You take care and I really hope you can get seen by a human being soon. Cris x

jenzie06

Wanted to send you a hug. It really doesn't have to be like this.

Are you getting the horrid attitude off the nurses, consultants or registrars?

Usually my care is fine but I insist my questions are answered as I only get a 10min appt every 6months and don't want to be left in the dark. I have written in last year, it wasn't a letter of complaint but to express my disappointment at my latest appt. I'd seen a registrar rather than the consultant and he had rushed me in and out of the room so fast I felt like I was on castors! Plus he dismissed my questions as he didn't know the answer (instead of actually finding out!!) and he refused to examine my ankle as in his words 'he's not good at ankles'.

I wrote about my disappointment at the appt and how upset I felt when I came away. I wrote that I understand that we have to work as a team but ultimately its my disease and my body. I didn't want to make them cross as I knew I had to go back in and work with these people. But I wanted to give some feedback otherwise how would they know how I felt?

I would really recommend talking to them, if you need some support there is always pals at the hospital. Or you could request a second opinion at another hospital.

I hope you feel better soon.

jenzie06

Oh and they should tell you what things mean rather than making you 'google' it - they sound like they are being lazy!

elnafinn

Dear Dolittle

I am so very sorry to read your posting. It is abysmal, the treatment you have/are receiving. I cannot believe that you have put up with this kind of treatment for so many years. It all needs to be addressed and you really must complain. Is it PALS that you go to in the first instance? I believe that is a good port of call.

You really do need to talk with someone in the know. It may be a good idea to call the helpline here and get this all out in the open. I am sure you will feel a little better after unburdoning all this mess which is none of your doing. The helpline is confidiential and I have heard many peeps have been greatly helped by calling them. They are very used to people being upset on the phone and you have every right to be and they give you all the time you need, something which obviously you have not been receiving from the NHS.

Dear Dolittle, with feeling so unhappy, you still replied to the post about me having had a TKR. I do remember a Jeannie2. I am humbled that you can still think of others when you are so upset. You are obviously a very caring person and it is often lovely people that are treated unfairly.

I want to hold your hand and wish to give you the strength to take this all further. You have been very brave to pour your heart out on here and that is a big thing to do and it is a good start to get better treatment which you so deserve.

What happened at the clinic you attended regarding googling info etc leaves me speechless. Start jotting down dates, times, names of people you speak to, what was said etc. This most definitely has to be taken further. If this is how you are being treated at your appointments, then others will be suffering too. You will not have been singled out at all. Why would they only treat you in this manner?

Dear Dolittle, Do keep calling in on here and letting us know how you are going on. Writing this down has probably helped you more than screaming and as you can see, we are all shocked by your message and on your side and supporting you.

Lots of love and hugs,
Elna x(())

woodbon

Hello,
What a horrible thing to have happen to you. I just can't understand why people are so nasty, when a couple of minutes explaining something, may in the end, save them having to see someone else to get the answer.

As for googling something, well, thats OK, but you have to be so careful some of the sites are just trying to sell a wonder cure, ha ha, some are for medics and are so detailed and technical that they are impossible to understand, and can frighten you. Often the pics are of the really bad cases, not the normal day to day people they see in clinic, but they can be presented as 'this is what happens'. You need to talk to your GP and explain what happened and how frightened you are and how you still have no understanding of the problem. He should send you either to a different consultant, or another hospital.
Take care, love Sue xxx

sharmaine

Hi
It doesn't sound as if they're treating your queries with any consideration at all. It may be useful to write down your questions before hand. This forum is a godsend as far as advice is concerned.

That said it shounds as if you've been rudely treated. You should complain.

Sharmaine

dolittle wrote:

Anybody got a hand I can hold? Don’t want to go into lots of detail so that it will worry others, but I feel like screaming.

Have had this damned awful disease for 10 years now and the personal support I have received has been bordering on cruel at times – gruffly uttered words like ‘it’s your disease – it’s up to YOU to control it’, ‘the NHS is here for taxpayers’. I could go on and on with examples like these.

Yesterday I re-attended a clinic and when I asked questions regarding the tests which had been carried out, was told .. ‘Google this link on the internet and if there is anything you don’t understand, write it down and I’ll discuss it when I see you in 3 months time’. I asked how serious the condition was and if it could be fatal – the reply was ‘Is it fatal to drive a car?’ …. End of conversation. I couldn’t make the future appointment because ‘the clinics are all full – you’ll have to wait’.

I have just commenced treatment with Humira and, even though I’m apprehensive (afraid) about side effects, had adopted a very positive attitude … I want this to work. I am not what the medical profession would call ‘an inadequate personality’ and I don’t whinge, but I’m sitting here in tears and feeling absolutely destroyed.

Please, somebody, tell me there are others who are treated in this manner …. and it’s not just me - I have never given anybody any cause to be 'off' with me.. I spent nearly a decade working in the NHS, at one stage on duty 24 hours a day 7 days a week, but I never, ever made a patient feel the way I do now.

Sorry, but I have to share this with someone ……

Dolittle

annebr

I agree with everyone you should complain, do you hae a supportie GP? It's your health and you need to be fully advised so that you can make informed decisions not just palmed off.

One of my first consultations I seen the registrar rather than the consultant, he looked at the x-ray didn't know what he was looking for so couldn't advise and when I tried to go through the questions I had he said 'that this wasn't the place to do that. Before I left I made sure I had another appointment this time with the consultant. I went to my GP and told him about the experience and he lifted a dictaphone and composed a letter straight away voicing his disgust at what happened.

It's bad enough having this without having to fight eery step of the way for answers and advice.

Anne xx

happy_feet

This is awful, I dont know what to add apart from being treated in this way especially when youre not well wont help. I cant understand why they do the job if they fel they have to behave like that with people. Ive got my first appointment on Monday and Im very nervous. I hope you manage to get to see someone nicer.
Another thing, its wrong telling you to Google stuff, not everythings true whats written on the net and you could read things that would frighten you.

dolittle

I’m absolutely speechless at the response to my mumblings this morning. Thank you all so very much for your support and good wishes. I was in ribbons. Following that I got a heart-breaking e-mail from a very special friend whose husband is in ICU, which finished me off altogether … so my husband took me out. We went to a wonderful local market and bought a new watch, the size of big ben, for my old mum (104) who has been demanding her breakfast at 2 in the morning ‘cos her watch went kaput! We got back after eating out and I found your posts – boy, it’s picked me up no end.

Elna – what an extraordinary lady you must be! Here is you, not long after a TKR taking the trouble to support me. I can’t begin to tell you how much I appreciate it. I’m not usually given to ‘caving in’. I have contacted the helpline. Their patience was amazing and they pointed me in the right direction. Help is at hand. I would encourage anybody to ring them if they have a problem.

It wasn’t the Rheumy clinic I attended – I have already changed my RA consultant, although I, too, keep getting to see registrars … different ones each time. It was a clinic that came on the scene as a result of RA medication tests. For the past year or so I have asked my husband to accompany me. He agrees with me that if I had relayed the happenings to him he wouldn’t have believed it but, like me, hopes consultation rather than confrontation will sort it. I have found that a head-on confrontation resolves very little, so I have tended to bite my tongue – if I ‘start’ there will be ructions!!!! I will do some research, speak to the informed in other places than the hospital and then go in 3 months armed with information – to talk with a quiet voice, while holding a big stick!

I’ve read about someone else keeping a meds. Diary. I’m doing the same with Humira, so that the RA people know what my routine is and how things have been over the weeks – it saves time. It also saves my husband fishing around for dates of injections and deliveries should I be ill.

Today while I was at the market I found a gel face mask which you can heat or chill. Since I’ve been on steroids and these injections (and making amess of my face crying), I’ve found my face goes ‘puffy’. I put this mask on when I got home and, boy, has it taken the puffiness down. Seemed silly at the time but I’m glad I got it.

Sorry about the epistle – I’ve run out of steam now … so I’ll shut up. Thanks, once again, for your support.

DoLittle

ritwren

I just wanted to say I totally agree with what everyone has posted and think you've been treated appalingly. Please don't think they're all like that as they are'nt. I would say to your GP how you were treated and also ring the hospital and ask for the complaints department. When you write to them they are duty bound to reply to you within a few days to acknowledge your complaint and they then have to look into it and let you know what's happened. I honestly do think it's worth doing as they cannot under any circumstances be allowed to treat you like that.
Very best of luck, I hope your new medication helps.
rita

elnafinn

Dear DoLittle

You have made MY day to read that YOUR day was more or less a complete turn around. I am relieved that you plucked up courage to call the helpline. I would not hesitate, if I needed them either, because I have heard from others on the forum, how wonderful and patient they are. It is absolutely no "trouble" to support you, my lovely and I have been rewarded so much by your later response in that you can see a way forward and also that your husband was so caring. I do hope your friend has better news of her husband who is in ICU - he will get the best care possible and be made as comfortable as can be. Fancy your mum being 104. Bless her. Pleased to hear also that the gel face masks were a good buy.

Lots of love
Elna x(())

skezier

Hi DoLittle,

Just realized I remember you as well As Elna said glad the day got better for you and well just going to leave you a ((( ))) Cris x

dolittle

Hi Elna,
Ta for your post - yes, I feel much better. Thanks.

Me ma! (bless her) - I put her on the bus about half an hour ago - she's on her way over to you. Blue coat, black hat with a feather in it and a red 'walker' - though she's got no watch. She's a feisty, stubborn, determined little woman and I thought she might just be a distraction from the pain for a while. it'll give me a rest from the 'why are there no pockets in this cardigan' - you know, big earth-shattering problems she has! (just joking).

Eh! it's nice to have floated up to the top again and be smelling the coffee. Have a better day today.

Hi Cris,
Thanks for your kind words. It really does help.


I won't say anything about my friend, but if you CAN spare a prayer for Yvonne, she could do with it.

Do Little

valval

hi do little think you on the right track sounds like you had a much better day sorry about your friends troubles will be thinking positive thoughts for her . have a good weekend and get your mum some pockets where she going to put her hanky lol

elnafinn

Dear DoLittle

You did make me laugh about sending your dear mum over on the bus! I used to visit someone aged 99 and they were a right card. I bet your mum is too!

Your friend will be in my thoughts.

Love
Elna x

katat1

dolittle wrote:

Anybody got a hand I can hold? Don’t want to go into lots of detail so that it will worry others, but I feel like screaming.

Have had this damned awful disease for 10 years now and the personal support I have received has been bordering on cruel at times – gruffly uttered words like ‘it’s your disease – it’s up to YOU to control it’, ‘the NHS is here for taxpayers’. I could go on and on with examples like these.

Yesterday I re-attended a clinic and when I asked questions regarding the tests which had been carried out, was told .. ‘Google this link on the internet and if there is anything you don’t understand, write it down and I’ll discuss it when I see you in 3 months time’. I asked how serious the condition was and if it could be fatal – the reply was ‘Is it fatal to drive a car?’ …. End of conversation. I couldn’t make the future appointment because ‘the clinics are all full – you’ll have to wait’.

I have just commenced treatment with Humira and, even though I’m apprehensive (afraid) about side effects, had adopted a very positive attitude … I want this to work. I am not what the medical profession would call ‘an inadequate personality’ and I don’t whinge, but I’m sitting here in tears and feeling absolutely destroyed.

Please, somebody, tell me there are others who are treated in this manner …. and it’s not just me - I have never given anybody any cause to be 'off' with me.. I spent nearly a decade working in the NHS, at one stage on duty 24 hours a day 7 days a week, but I never, ever made a patient feel the way I do now.

Sorry, but I have to share this with someone ……

Dolittle

Dear Dolittle,

Here is my hand to hold, just as you held mine earlier today when you replied to my rant about my appointment yesterday with Rambo the Registrar who made some very upsetting comments to me.

My regular Rumo told me ages ago to be careful about what I read on the internet as there is some very spurious advice out there, so being told to google for answers to your questions was a stupid suggestion

It is not just you so don't think that you have done anything wrong. There are good and bad medics in the NHS and unfortunately we don't get to choose who we see sometimes.

As you said to me, don't take any notice of the nasty ones, remain positive and don't let them undermine you. I agree you should complain and ask to see someone else when you make your next appointment. That is what I am going to do as having had encouraging e mails on here I feel more assertive about what I am prepared to accept from hospital staff. They have no right to treat you with anything less than courtesy and respect and you have the right to complain if they don't.

Big hug and stay positive.

Kat
x

dolittle

Thanks for that, Kat, think that's the road I'll go down. I'm encouraged by the support .... wish my mum hadn't taught me to be ultra polite! ((( )))
Do

joyful164

Hi dolittle.
I have tried to analyse your thread and the different replies, and I have come to this conclusion: You have attended your Rheumatologist Dept. and received a rather bad appointment. You are not happy with the response to your problem and it has left you feeling quite depressed and this should not happen. Does the department have forms which you fill in about their service? We have them in every department at my hospital and you fill them in and post them into the box on the counter. And you don't have to leave your name. It's all anon. When the department have their departmental meeting, then these issues should be addressed.

I was told at the end of one of my meetings that all appointments were filled up to last Christmas even though my consultant wanted to see me within that time. I didn't get upset about this and, sure enough, within a week or two an appointment was posted to me.
I am lucky in that I get on with my consultant and he is a very nice person.
It seems that, somehow, you hit the department on a bad day and probably this won't happen again.

Each consultant can only see you for a certain length of time and he probably felt that you were intelligent enough to find out the information you wanted on your own, therefore, his time was not being taken up explaining something that the rheumy nurse could do. Not fair I know I suppose I am trying to put a different angle on the situation.

You need to see if they have these forms and if not, then send a letter to your MP with a copy to The Administrator of the hospital. That should do it. If a patient isn't happy it is their job to sort it out. Never know they have probably had a lot of complaints about this particular consultant.

good luck
Joy

elnafinn

Dear DoLittle

Your mum did well to teach you to be ultra polite. You can get your anger, points of view and so on over in a "polite" way, which to my mind is the best way to receive answers. You are a much valued person by those that know you who needs the appropriate time and help from the medics and this should be given to you. It is their job and they are paid to do just that.

Love
Elna x

skezier

Hi DoLittle,

Hey I always go ultra polite as I get teasey and sometimes....... its more effective For losing the plot..... I sky rant but its dodgy if you have neighbours Hope your day is ok and leaving you another ((( ))) Cris x